Neuro Phone Call regarding abnormal VEP and EEG

[drsdonthelp]

Well, I got the phone call from the neuro. explaining my test results.  Once again,,,,,,,,, dead end. I am ok with it though, I kinda already had a feeling that I was not going to have an end to this ordeal.

He explained that I do have partial seizures that effect my speech that could last up to two weeks.( never heard of it and dealt with people that had seizures for many years).

He then went on to say about the VEP being abnormal.... he said it could be due to my eye disease, even though on his paperwork it states consistent with demyelination process, I didn't question this statement because I was just waking up when he called and my brain was not working right at that moment. LOL

He then proceeded to tell me that all my bloodwork came back normal regarding inflammatory diseases, and lyme disease was normal. He asked if I had seen a rheaumatologist and if fibromyalgia was considered and I told him I had seen one and they said, its not fibro. and vasculitis was also written off.

So to end the conversation he threw at me CENTRAL SENSITIZATION SYNDROME !!!!!!!!! What the heck is that??

Anyone , help me , please explain,

Thanks,
Pam

[LisaJF]

You got it!

[drsdonthelp]

We def. need a hysteria group,,, laughter is the best medicine, so maybe these docs. are helping us !!!! They make us laugh!! LOL LOL

[LisaJF]

Get the LP done.

It's painless.  You'll be fine.

Toss the nitwit out the door, slam it with the bottom of your foot (of course if you cant balance well dont attempt that).

I am so tired of IDIOCY it is beyond me.  

We should form a club, "Hysteria" where we can laugh at all the $hit we went through.

Lisa

[drsdonthelp]

JJ- you snort....., and I start to cough when I am laughing, LOL too funny!!  Thanks for putting the picture together for me,, I didn't even look into it that way..... brain fart!!
Anyway,  I am going to copy this page so I can put it into my words if you don't mind, so I can bring it up to my reg. doc... You are so right, 3 different dx's instead of putting it all together, they are S T U P I D!!
Thanks hon!!

Ren-
Thanks for the suggestion, I most likely will start the search for a new neuro, because my reg. one I have now , tells me that I have anxiety and is a pill pusher, tired of him... this past one that did the testing on me, I thought was going to help, but then he too, dissmisses me!!

I spoke to my psychologist and he is writing a letter stating that my tremor is not anxiety related, He also told me about a neuro in my area that is really good, I have had many people tell me to go to him, I will be trying to see if I can get in to see him (with all of my reports)

I have not read about chronic inflammatory polyneuropathy, so thanks, I am going to do some reading...

I will keep fighting and searching, just going to take a break from these quacks for a while!

I am so not a negative person, I usually find the good in everything, and always give the benefit of the doubt,  but when it comes to something important , like your HEALTH!!!! that's when I get aggravated and negative!

Hugs,
Pam

[rendean]

Go for more!!! It took my general neurologist 5 referrals  before he sent me to the last and most caring, competent doctor I've ever met (and that's from an retired nurse's opinion).

Do not stop and pass go just because you did not get an answer from whatever number neuro or PCP you are on.

Don't give up  the fight until you have an answer that fits all of your symptoms.

It could be chronic inflammatory polyneuropathy or one of many other disease listed in the MS mimics section of the Health Pages.

Wishing you the best,
Ren

[supermum_ms]

Oh GF I so get the laughing, i've been laughing for years and I still can't help laughing to the point of snorting (lol) when STUPID is about!

There are a few little glitches with his conclusion, probably the biggest one being your test results indicate your having seizures, um since when did seizures become a sx of CENTRAL SENSITIZATION SYNDROME and not a NEUROLOGICAL sx?

Its so dumb and dumber, send the patient for tests, the test results come back abnormal so we'll NOT put all your test results together to form the big picture. No, we'll call abnormal EEG seizures, abnormal VEP eye disease and all the other results and sx we'll call central sensitization syndrome even though thats already been ruled out and isnt consistent with any of the abnormal or normal test results anyway!

Basically your left with 3 seperate dx issues, the central sensitization syndrome is more than likely wrong but at the very least it is 'acknowledgement' that you do have something diagnosible going on. All is not for naught or a dead end because you do have evidence even if the doctor is a total twit and cant put it all together, find someone who isn't such a duffus!

HUGS..........JJ

[drsdonthelp]

Jen-  Yes, I am so glad that I asked for copies of my reports and now have something else for my records. I am going to cancel my appt. on monday because I honestly don't think I can take another one telling me I have anxiety and why I didn't take my klonopin for my hand tremor.

I never even mentioned to my reg. neuro that I was having these tests done, I only told him that I saw my GP and she requested me to get an MRI done and that's what I brought him on my last appt.

Thank you Jen

Lisa-  Your right, I am laughing at this whole process,,, it is absolutely rediculous. I think I am hesitant on the LP because I am scared. Why? I don't know. I feel like I will go through the pain of this test and it will not show anything.

I am asking around to find a new neuro, but I am going to wait alittle. I want to enjoy a break from doctors.

Thanks guys,
Pam

[LisaJF]

Go on your fifth and I dont give a rat's @$$ if it was your tenth.  I still think you should do the lumbar puncture -- even though it is not a definitive diagnostic tool for MS -- what the h3LL? Why not?  Add it to your I think I had every test in the world done book.

This is NOT funny.  You're laughing because this entire process is ridiculous.  The $hit you have to go through is just amazing.  I can now see why people are jaded with doctors.  I had two schmucks that I contended with this past week.  Now I understand.  

Lisa

[jensequitur]

Well, even though he didn't make any sense, you still have the test results.  An abnormal VEP is just another piece of the puzzle - make sure you have all the results, and take them to your regular doc.

[drsdonthelp]

LOL,,,, too funny!!!
I don't even know why I am laughing at this whole process of the waiting game. Let's see,,, he is my 4th and I don't have to go back to him, unfortunately I have a neuro appt with my regular neuro on monday a.m. and I don't even want to go. What's the sense! These neuros need to get their heads out of their a55 and do their job !!!!

I have read about fibro, chronic fatigue syndrome, central sensitization (just recently) and I feel its the catch all (umbrella) the mask on the face of the real deal!!!!!

Really???????  Are they serious??? What are we left with??

I honestly laughed when I hung up the phone with him after he said central sensitization, I said Thank you doctor for your time and explaining this to me. He said he does not want to order a spinal tap, because he thinks it will be negative anyway, so I said that's ok, I don't want to have one anyway, I literally hung up the phone and had a moment of cracking up laughing.

What a fricken joke!!! DRSDONTHELP
MEDHELPDOES!!!!!!!!!!!!!!

Pam

[LisaJF]

Central sensitization syndrome is equivalent to Fibromyalgia Syndrome (FMS).  Heh.  He did a sneaky thing by giving you a different name for the same thing.  At least that is my understanding.

Erm....I dont know about this.  Why don't you go get a second opinion?  Huh?  Put this doctor aside and get a second opinion (if he's your 3rd opinion, I don't care -- keep going).

Geezus H Priest.

Lisa